Thursday, April 22, 2010

Acts of Kindness

People in general are so kind and caring. It is amazing how understanding people have been when they learn about my decision to be proactive against my BRCA positive status. I even mean acquaintances that don’t really know me. I really expected to have at least a few reactions that I have read about other women receiving. Things like them saying, “But you don’t even have cancer,” or looking at me like I have lost my mind. But what has actually happened is every single person I have told has told me that they understand my decision and of course I have to do the surgery. I was honestly worried before I would discuss my surgery decision with others (besides my family). Now don’t get me wrong, I didn’t go around announcing this to anyone and everyone. But I informed my son’s teacher so she would have a head’s up in case he was acting a bit emotional and to explain why I would not be picking him up and dropping him off for awhile like I always do. She was so sweet and wonderful. I am also thankful for how caring the ladies were who watch my youngest son when we go to the gym. My gym also has drop-off hours, and I had to take advantage of those so many times for all of my appointments during my decision process and surgery preparations. Those two women never once made me feel bad for having to drop my son off for an hour here, two hours there. And they always ask how the appointments go and how I am feeling. People are so kind.

There is a support group at my hospital for young breast cancer survivors. My genetic counselor suggested I attend one of the meetings and discuss my situation with the brave women attending. I went to one of the meetings when I was first making all of my decisions and arrangements. I also attended last night. These women are SO courageous and caring. First of all, I felt unworthy to be with them. I have never had to go through the pure hell all of them have. I did not want any of them to think, “What does she have to complain about? She doesn’t have cancer. She doesn’t know what we are going through.” However, my fear and worries were soooo unjustified. Many of the women shared their stories and feelings before it was my turn. And as I described my BRCA status, my family history and what I had decided to do – they were all nodding and listening intently. During my sharing, I pointed out that I knew I had it nowhere near as difficult as they had it and that I really appreciated them allowing me to listen and share. One of the woman spoke up and told me that she thought I had a more difficult decision to make because I didn’t already have cancer (and may not actually ever get it), but that for them they weren’t really given that opportunity. There were nods from the other women. I was stunned, because to me they are the brave, strong ones. The women gave me hugs after the meeting and told me I would be in their thoughts and prayers. I am so appreciative to them for sharing their experiences with me and listening and supporting me. These women are amazing and I am in total awe of their strength and love. People are so kind.

My family and friends have been so wonderful! I have had nothing but support from all of them. Friends have been so sweet listening and advising and sending their love. My sisters [all of them, I include my husbands :) ] have been very understanding and supportive. They all make sure I am doing ok and that I know how much they love me. My dad has been there for me since the day I found out I was BRCA1+. He knows me well enough, that he said, “So, it’s actually more a question of when, not if, you’re going to have the surgery, huh?” He was right on the mark. My husband’s parents have been just as great. In fact, my mother-in law is coming today to spend the next two weeks helping with the boys, helping around the house and helping me heal. She has been so wonderful. After I first told her my decision, she agreed it was the best decision for me and told me if I was ever having doubts or any fears to just give her a call and she would give me a pep talk. My strongest supporter is my husband. He is truly amazing! Honestly, I talk a little too much normally and he has had to listen and listen and listen these past months about surgery this and breast that and on and on. My fears, worries, concerns, questions, etc…he has worked through all of them with me. One day I apologized for BRCA babbling again, and he told me that it does not bother him. He said he knows that the surgery is all consuming right now and I should discuss anything with him because that is what he was for. I am sure everyone thinks their spouse is the best, but my husband really is! He is the most caring, loving, thoughtful, supportive, wonderful man. I can’t even begin to describe how much he means to me. We have been together for 14 years this fall and I can’t imagine my life without him. He is my best friend, my confidant, my love. He knows me better than anyone, sometimes better than I know myself! :) I love him more everyday! I am truly the luckiest woman in the world! Thank you everyone, for everything!

Tomorrow morning is the PBM surgery. It is the end of my natural breasts, the beginning of my new “foobs”, as many call them. The end of my waiting, the beginning of moving forward. It is the end of my fear and the beginning of my relief.

Until next time, when I am on the other side of my surgery, here’s to kindness, love and silicone.

Friday, April 16, 2010

Letters to the Boys

Well, I’m not meaning to post another sad blog, but there are some things I have been thinking about in order to prepare for surgery that aren’t exactly “happy thoughts”. Let me preface this by saying that I’m honestly not thinking the worst. However, I am also trying to make sure I have all of my bases covered. Hang in there with me; I promise the post finishes on a strong note! First, my husband and I have been thinking about paperwork stuff that needs to be taken care of prior to my surgery. Things such as, making sure we have enough life insurance and preparing a will. We haven’t started the will yet…actually it’s really something we should already have taken care of, but it’s not really one of those “fun” things to think about. Discussing crappy things like if both my husband and I were to die what would happen to our boys? Or if something were to happen during surgery that left me on life support, or brain dead, or… crappy, crappy, crappy…

Although the surgery preparation has been going on for months, it quickly became even more “real” a few weeks ago, with a conversation between my husband and I. I, of course, waited for the most appropriate time and place to share some of my thoughts with him…not. We were in a restaurant eating dinner with the boys, and when I was sure the boys weren’t paying attention to us, I asked him if he thought I should write letters to the boys, just in case something were to happen during surgery. I know, that seems like a dumb time to ask, but when is it ever a “good” time to ask a sad question like that? So I figured at least I would get the question out and off of my chest. Needless to say we both got too choked up to actually continue the conversation in the middle of the restaurant. It surprised me how asking the question out loud was more difficult than I expected. I had considered writing them letters for quite a while, but actually asking the question triggered more emotion than I could have ever anticipated.

Since then I have really been putting off writing the letters. I couldn’t even think of where to start. My guys are so little that I wasn’t sure what to write about. They are only 3 and 5 (well 6 next month) and I haven’t had the chance to see them grow up into young men or have tons of accomplishments that they would actually remember. If something were to happen now, would they even remember me? My oldest would have a few memories and my 3 year old probably only a couple. I mean when you think back on your life, how many memories do you actually have from when you were 3? Or 5? I don’t have enough memories from when I was those ages to feel satisfied with what the boys would, or rather wouldn’t, remember about me. But in reality this isn’t for me. It is for my sweet, silly boys. I wrote the letters yesterday and it was not as bad as I anticipated it to be. I wrote to them separately and I wrote about all of the wonderful traits they already have. For instance, how my older son is so sweet and caring towards others. The other day at the park he saw a little girl crying and asked her what was wrong, but she didn’t answer him. He didn’t know what to do so he told me a little girl was crying over by the climbing wall and he didn’t know what was wrong with her. I walked over there with him and we made sure she was ok and after that he asked her if she would like to play soccer with him and his new soccer ball. He is so thoughtful. My younger son is just so silly and sweet. First, he always picks me flowers. If he sees a flower, usually the dandelions that grow in our grass, he darts for it, picks it and says, “Pretty flower for Mommy!” He also loves being silly. If he does something that makes my husband and I crack-up, he just keeps at it to make us laugh even harder and longer! The other thing about both of them is that they are both soooo much like my husband and I in the sense of humor department. My husband and I are both VERY sarcastic and crack jokes to each other and the boys all of the time. We all like to act silly and make each other laugh! Those are such wonderful times when we are all laughing so hard! I SO LOVE my boys (all 3, my husband too!)!

So instead of making the letters sad, I made them about the boys and how truly amazing they are already. I told them stories like the ones mentioned above and others to let them see themselves through my eyes. Don’t get me wrong, I am not one of those moms who thinks her boys do no wrong and everything is always hunky-dory. But now is not the time to focus on how hard and frustrating being a mom can be at times. I am actually very proud of myself for finally writing the letters and for giving the boys a glimpse of themselves through their mother’s eyes at these wonderful ages. That is, of course, only if the letters are even needed. As I said earlier, that is not something I am really considering. If I thought my risk of dying from this surgery was great I would never even consider it. I mean, duh! I am doing this to save my life and spend a long and healthy life with my husband and boys. I WILL live to be over 50 years old, unlike my mother, my grandmother and my great-grandmother! So even though some tough things had to be thought about and talked through recently, in the end this is a positive decision for myself and my family.

My surgery is a week from today and this time next week I will be in my hospital room finally done (well more like started! It’s still a long process, but you get the point). I am still nervous about the surgery, how I will handle the pain, being able to let everyone else do all the things I usually take care of, what the results will be like, etc, etc. But I am ready.

Until next time, here’s to memories, silliness and silicone!

Friday, April 9, 2010

What If...

In college I took a poetry class. I’m not really a poet or a great writer, but as I wrote for this class, most of the poems developed from my intense grief from losing my mother. When I took this class it had been 2 ½ years since her death, but I had not really had the time to mourn. She died about 2 weeks before I moved away to start college. I was only 18 and had been in denial before her death because she was my mother and mothers aren’t supposed to leave you when you are only 18, right? To make you feel better people always say, “The pain will lessen over time.” However, that is and it isn’t true. Some days I’m ok and some days I tear up over the littlest thing that reminds me of her. Some days I can talk to someone about her death without a hitch and others I get choked up before I can get a few words out. So, I would be lying if I said that I have now, almost 12 years later, completely mourned my mother’s death because there are pieces of me that are forever broken. I wrote the following poem in that class. It mirrors what my mom went through, but is written as if it’s me going through it.

What if

What if my normal cells begin over replicating
by the millions, deviously devouring

each organ, each tissue, each healthy cell,
until I am no longer human being
but a sculpted skin mold oozing

with foreign, yet not so foreign killer cells,
stretching their growing, grasping claws of death
into each and every crevice of my body,

snidely snickering, intruding my lungs –
continuously producing, incapacitating my lungs,

until the machine helps me breath;
the machine, which supports me,
my limp legs, too weak to stabilize my measly

100 pound body, once displaying rosy cheeks
now sunken back like my chocolate brown eyes,
which are pressed into my face like two caves resting in my skull –

entire body diminishing
overflowing with disease –
nausea, vomiting, aching body,

bald shiny head –

I want to be normal again.

That last line is something my mom actually said to me, several months before her death, after I brought her home from one of her chemos. She felt like no one understood what she was going through, except for her sister who had already lost her battle to ovarian cancer. She felt like she couldn’t talk to anyone. I told her she could talk to me, but she was Mom and wouldn’t burden me with her pain. She just wanted to be normal again and not have to be sick all of the time. It breaks my heart to think that she felt so alone. But, although I am not going through anything near what she went through, in a way I understand her feelings. I have a wonderful husband who I can talk to (poor thing has to listen way too much :) ) and very supportive family, friends and the BRCA community. However, it still feels like sharing too much and talking about it too much is a burden on others. I guess in a way that’s why I didn’t argue too much when my husband and sister suggested a blog. Whether anyone reads or not, or even understands, at least I can express some of my feelings by writing. So, I am sorry for being a “Debbie Downer” today - just feeling a bit blue. On the bright side, I am being proactive against breast and ovarian cancers so I can be normal, whatever that may be.

Until next time, here’s to poetry, “normalcy” and silicone.

Tuesday, April 6, 2010

Do Your Boobs Hang Low?

“Okay, let’s have a look,” the plastic surgeon says as she opens my robe. She grabs her tape measure and goes to town, taking all sorts of measurements. Determining the distances from my collar bone to the nipple and underneath of each breast, then across horizontally between the pair, just to mention a few. On one of the visits I remember smiling over at my husband afterwards and saying proudly, “My measurements were almost exactly the same for each side! At least they sag symmetrically!” My husband later told me that sitting there watching someone take measurements of my chest was one of the weirdest parts of the plastic surgeon ordeal. I agree, however, I also found it unnerving to be naked from the waist up and have to turn around and have the doctor analyze my chest, back and stomach to determine what type of reconstruction my body would be suitable for. For example, if I had decided to perform a surgery that entailed using my own fat from my stomach to form new breasts, I was told the newly constructed breasts would be smaller than what I am at now. Huh, I thought looking down at my belly…there seems to be more than enough fat in there to me. Consequently, my husband informed the doctor she was more than welcome to use some of his! How sweet! Ha! :)

A reconstruction decision provides a variety of options. I am going to do reconstruction utilizing expanders and implants, but as I also briefly mentioned above you can choose to reconstruct the breast from your own fat. Before reconstruction, a mastectomy is performed. This involves removal of the breast tissue which goes all the way up to the collarbone and over to the underarms. This is an extremely time consuming surgery because great care needs to be taken to remove as much of the breast tissue as possible. In addition to the breast tissue removal, you also must consider skin- and nipple-sparing surgeries. These involve keeping your chest skin and/or nipples intact, or conversely, full nipple reconstruction. Following mastectomy, if implant reconstruction is performed, a tissue expander will be placed under the chest muscle in order to slowly stretch it to make room for an implant. Saline is added to the expander every 1-2 weeks until it reaches the desired volume. A second surgery is needed, known as an exchange surgery, to replace the expander with either saline or silicone implants. This whole process lasts several months. Some of the other choices for surgery are known as flap surgeries. These utilize your own tissue from your tummy, back, thigh or buttocks to recreate the breast. These surgeries create very natural feeling breasts since it is your own fat/tissue, however the recovery is much longer than recovery from implant reconstruction because other parts of your body are involved.

One of the most important things is that you are fully confident and comfortable with your doctors. My husband and I met with three different plastic surgeons in order to make sure we knew all of our options and received several opinions. Dr. A is wonderful. She is great at answering our endless questions and describing specific aspects of the procedures.

If I’m being totally honest one of the comments that gets frustrating to hear is, “At least you’ll have perky boobs for the rest of your life!” I know it’s likely just a knee-jerk, reactive comment, and that people are just trying to be nice and look on the bright side, but in reality I would prefer to keep my own natural breasts. This is not a decision I am taking lightly or that I am excited about just because my chest may not sag (well sag more than it already does) in the years to come. I may joke about silicone or speak lightly of my gravity driven chest, but mostly it’s a defense mechanism to get through all of this. If I really felt I had a choice, I would not choose to cut off my natural boobs even if they’re trying really hard to reach the ground. See, there I go again! But, my boobs are plotting against me. My pre-emptive strike against them is less than three weeks away bringing me much closer to relief and freedom of fear.

By the way, I found The Breast Reconstruction Guidebook by Kathy Steligo one of many helpful sources of information.

Until next time, here’s to plastic surgeons, expanders and silicone!